Dear Maddy,

You should be 9 years old on Thursday. WOW! Where has time gone? So much has happened in the last 9 years. I often wonder what life would be like with you still here with us? Would you have learned to talk and communicate with us? What would school be like for you? Who would your friends be? Would you like to read as much as MK? Would you like Tampa?

Because it has been 9 years since you were born, we know so many more people now than we did then. They don't all know your story. I tell people all the time all about you. Even MK talks about you pretty often. She has said on several occasions that it isn't fair that she didn't get to know you. I know I blogged your story but it's on a site that isn't accessible any more, so I'm going to tell it again!

I had a very normal pregnancy (at least as far as I know, it was my first after all). I felt you move, you always had good reports from the doctor. As you due date approached, I felt good and did everything as normal as always. Uncle David had taken Grandma on a cruise and the rest of the family was re-doing her kitchen. April 8 (a Saturday), we were all there working on the project. We had ordered pizza for lunch. I ate LOTS of thin crust. I was outside with Aunt Pam and Ginger spray painting the cabinets. I had to use the bathroom and went inside and did what I needed to do. By time I got back to the carport, my pants were wet (I just peed... remember?). I told Pam and went back to the bathroom. She went and found Gaga (She wasn't Gaga then, Lulu wanted her to be GrannyMomma back then. Thankfully MK changed that). We realized my water had broke. I called Daddy because he was at home in Elba. Aunt Cindy and Gaga took me to the hospital. We got all set up in a room and the nurse hooked me up to my IVs and all. Things were chucking along. This all started around 5pm. Later that evening around 1030 or 11 I moved wrong and the monitor they had attached to me to monitor you fell off. When the nurse tried to put it back on, she couldn't find your heart beat. Things get a little blurry around this time for me. I was dilated about 4cm and they decided I needed to have a C-section since they were having trouble finding your heart beat. It was the middle of the night at this point and they called the operating team in (we were in a small town hospital and they weren't there around the clock). Before everyone got there and we were able to get ready for the operation, you decided you were doing things your way and made your entrance into the world at 1225 am on your due date. You weren't breathing but Dr. Bang quickly helped you get started with that. Dr. Bang wanted to send you to the local NICU for observation. Remember I said we were in a small town hospital? They didn't have a NICU. They made arrangements for you to be taken to Baptist South in Montgomery. Big Poppa drove Daddy to Montgomery so they could be there with you. I couldn't leave the hospital yet. I got some sleep (it had been a long day/night). My doctor came around later in the day and said I could leave. Gaga helped me get my stuff together and took me to the NICU. There were several of us attempting to sleep in the lobby when the nurses called to tell us you had quit breathing and that you were put on a ventilator to help you breath. The doctors were not sure what exactly had happened and why you were not breathing. You were also having trouble controlling your body temperature and you were pretty lethargic/non responsive. There were lots and lots of people praying for you! Our friend Matt started a website so that people could be kept updated (way before it was the cool thing to do).

Great Grammie told/reminded us about two of your cousins, Olivia and Hunter. Hunter was only about 20 days old when he got his wings. He was diagnosed with Non Ketotic Hyperglycinemia (NKH). NKH is a rare genetic disorder that affects 1 child in every 60,000 born. Children with this condition have a problem breaking down the amino acid glycine. This is caused by a defect in the genetic code for the machinery that is responsible for the glycine breakdown (called glycine cleavage enzyme). Olivia is living with NKH because her parents and doctors knew what to look for and were able to get her on medication right away. Everything we read about it, it appeared you could very likely have this. We knew I the gene was in my family as Olivia and Hunter's dad is my 1st cousin. We talked with the doctors and they too were leaning toward this. We agreed to test that would determine if you had NKH or not. The test required a spinal tap and lab testing. It seemed like forever to get the results (I think it was just a day). The test came back positive for NKH. We were devastated and didn't know what we were going to do. We talked to doctors and family members and prayed. You were still on a ventilator. We decided that it was not fair to you to keep you on a ventilator. We talked to doctors and agreed we would take you off the ventilator at 1225 am on April 16th (exactly one week after you were born). Well, there was some miscommunication and we did not have the 2 doctors there in the middle of the night to sign the paperwork. The next day we were told that the blood work that was used to determine the NKH diagnosis was contaminated and they needed to do it again to determine if indeed you did have NKH. While we were waiting for this to happen, you began to breathe on your own and were taken off the vent! 9 long days of you being on the vent was finally over. The new blood test results came back and it was negative for NKH. We were back to not knowing what was wrong. You were still pretty non-responsive, could not maintain your body temperature and were not swallowing, but you were breathing!!

You were keeping the doctors puzzled. After a while (the time all runs together) it was decided you needed a g-tube for feedings. The hospital you were in was unable to do this and you were transferred to Children's Hospital in Birmingham. You were here about 2 weeks. You got your g-tube and Daddy and I learned how to take care of it and feed you with it. We finally took you home on May 23! You were on an apnea machine that monitored your breathing and had your g-tube. You didn't cry (literally you didn't cry). We still did not know exactly what was wrong. you were diagnosed with some long fancy thing that meant "brain damage due to lack of oxygen".  We didn't know what all this would mean for you or us, but we were up for it!

You only lived right at 10 months, but had a full full life! I'll come back and tell you more about it later this week.

Click here to read part 2

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